Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)

 
 
Thread Tools Display Modes
Prev Previous Post   Next Post Next
Old 09-26-2009, 09:56 PM #27
Mslday's Avatar
Mslday Mslday is offline
Member
 
Join Date: Aug 2008
Posts: 409
15 yr Member
Mslday Mslday is offline
Member
Mslday's Avatar
 
Join Date: Aug 2008
Posts: 409
15 yr Member
Default

Quote:
Originally Posted by hopeful View Post
Hi MsL,
I saw that you wrote that you have pamidronate infusions. What are they. I am looking for options to discuss with my neurologist when I have my appt in Oct.
Hope you are having a good day.
hopeful
It's not a drug to play with, primarily used for bone cancer patients. It is a bisphoshonate drug which is under investigation for use in RSD patients. My doctor stopped using it after my reaction and there is no clear evidence that it works for RSD.

Like I said I had a very severe allergic reaction to it, more than the flu like symptoms that's described in the attached document describing it. http://www.cancercare.on.ca/common/p...x?fileId=10683 I Know there is a study out there about it's affects on RSD patients but I can't find it right now.

I lost my hearing partially in one ear, the blood vessels in my opposite eye all burst and I have a permanent ringing noise, sometimes loud, in my head that makes it difficult for me to hear especially when there is any type of background noise. That being said I did have a temporary reprieve from the deep bone pain I initially complained about. Was it worth it NO! I'm not able to take any other drug in that class, I was taken off all the osteoporosis drugs and can't try any new ones. Not good news for an RSD patient who isn't even yet past menopause.

It was the second infusion that took me over the edge and landed me back in emergency at the same hospital I received the infusions. I ultimately had to resort to a doing a "sit in" at the waiting room of the ENT clinic insisting that the head of the department see me so I could get some help. The emerg department had released me with a shrug of their 3rd year resident shoulders claiming it was merely a migraine. I suffer from migraines so I knew that there was much more to it than just that and I was really sick and scared.

I did get help ultimately, including oral steroid, steroids injected directly into my ear drum and HBOT. The loud explosive motor sound is now down to a low buzzing noise that no longer makes me want to cut my ear off. I now know why Van Gogh did that, it had nothing to do with him being crazy, it's said that he suffered severe tinnitus too and it is that relentless sound that drives one crazy. I'm so grateful it has subsided to a dull roar.

I wish you well with your up coming appointment, please let us all know how it goes for you. I just can't recommend this particular drug.

MsL
Mslday is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
AintSoBad (10-07-2009)
 


Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off


Similar Threads
Thread Thread Starter Forum Replies Last Post
can't cope with $$$$ dogodlvr Bipolar Disorder 4 06-18-2009 05:43 PM
How Do You Cope? kalamity_jane Traumatic Brain Injury and Post Concussion Syndrome 11 03-28-2008 03:08 PM
How Do You Cope geraldo Parkinson's Disease 7 01-12-2007 03:10 PM
The Only Thing We Have to Fear Is Fear Itself clouds z Social Chat 0 09-05-2006 09:36 PM


All times are GMT -5. The time now is 06:00 PM.


Powered by vBulletin • Copyright ©2000 - 2025, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise (Lite) - vBulletin Mods & Addons Copyright © 2025 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

The material on this site is for informational purposes only,
and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider.


Always consult your doctor before trying anything you read here.